It's strange at the moment to think I have to go to hospital to have some quite significant treatment when I feel fit and healthy and just have this minor irritation on my tongue. I will be going through up to six surgical procedures in one day and my body will be subjected to a lot of trauma from which it will need weeks to recover.
The Tumour
Months ago, quite possibly even over a year ago I started to notice a slight pain in the side of my tongue. I'm not totally sure whether it's related to what's developed there but a squamous cell carcinoma (cancer tumour) has sprung up to at least 5mm across. It's on the underside of my left tongue mostly under the surface. I can feel a lump there and it's a bit painful. The pain level is currently only 1 or 2 out of 10 though so it just makes eating and talking a little uncomfortable at times but generally I can't even feel it.
Here is a page from Cancer Research UK explaining tongue cancer a bit more in depth.
Around November 2020 this long term slight pain in my tongue was getting a bit worse, it was swelling a bit and it was very uncomfortable to eat and talk. The painful part was hitting my teeth and the pain was reaching 4 or 5.
I did some online diagnosing, as you do, and one possible explanation was a blocked salivary gland or salivary gland stone. The general advice was to massage it to encourage unblocking. I tried that a few times and it just made it very angry and although it initially seemed to make the lump smaller it came back with a vengeance and I couldn't really massage it again without it making my eyes water.
Doctors
One Friday evening in December I hit the wall and felt like I might have an infection. After some encouragement from my guardian angel godmother and getting past some minor fobbing off from the GP and 111, I saw my doctor on the Monday and was referred swiftly to see a specialist head and neck doctor at the University of Bristol Dental Hospital.
All Dr Cox needed was a very brief look at my tongue in that appointment to be certain of what was going on. She confidently and gently told me that she was quite sure it was a cancerous tumour. She arranged for me to have an excision biopsy there and then where a trainee dental surgeon cut a piece of the tumour to 5mm depth to be analysed under microscope.
The following five weeks after the first appointment at the dental hospital was a flurry of different appointments. I had a CT scan of my neck to see if there were any more areas of concern, then MRI from tongue all the way down to lungs. I had a follow-up appointment with Dr Cox and met the surgeon Mr Hughes who will do the work on me. Dr Cox confirmed on the 8th Jan as suspected that the biopsy showed cancer but that the CT scan had shown nothing of concern. Subsequently the MRI also showed nothing abnormal and the tumour itself didn't even show up on the MRI. In a further follow up appointment I got
to meet another surgeon, the head and neck specialist nurse, and the speech and language therapist. From the moment I went into the Dental Hospital I've been treated very well. Everyone has been attentive, spending as much time with me as I've needed. Meeting all the leading members of the teams who will be responsible for my treatment, care and recovery has certainly made me feel that it is a high level concern and that I am going through something serious.
The initial appointment kept details of the treatment to a minimum, which helped psychologically to take in the gravity of the situation and I'm sure it is totally intended to be that way. I have no doubt from my experience that the psychological effects of this illness and treatment are taken seriously and due consideration is taken not to overload patients. Each subsequent meeting with the doctors revealed more details about the procedures and all the possible long term effects. Mr Hughes, the surgeon, explained to me that because of not knowing the exact size of the tumour (the biopsy only went 5mm into it and the MRI and CT didn't show the extremities of it) there were two possible plans for surgery: Plan A and Plan B below.
It's been 7 weeks from the first appointment till now when I'm about to go in for the surgery on 4th Feb.
The procedures
I will be in the hospital at 7.15am. I don't know exactly when I'll be going into theatre but as my surgery could take up to 7-8hrs I imagine they will get on with it as Mr Hughes will want to get home for dinner. After the general anaesthetic they'll put all sorts of tubes in my including cannula (for anaesthetic and drugs), intubation (down the windpipe for breathing), feeding tube in the nose and probably more that I've forgotten. I can't exactly remember the order of procedures but this is my best guess.
Partial Glossectomy - Remove tumour and one centimetre of good tongue surrounding it. At this point they will discuss whether I will need a skin graft to reconstruct my tongue.
Neck Dissection - An incision will be done from under my ear to under my chin in the third natural crease down on my neck to remove the lymph glands for biopsy.
Skin Flap - If it's necessary to rebuild my tongue with a skin graft a 'radial forearm flap' of skin will be removed from my left wrist and an incision up the forearm will allow them to remove it's blood supply (vein and artery) too.
Reconstruction - The wrist flap will be sewn into the gap in my tongue and the blood supply connected up in my neck.
Skin graft - To repair the 'radial forearm flap' skin will be taken from my stomach.
Plan A or Plan B
Plan A will include just the partial glossectomy and neck dissection. If the size of the removed tissue is not too large that it will significantly affect my tongue's function then the reconstruction will not be necessary, I'll just end up with a funny shaped tongue. This option will mean a much reduced operation time and faster recovery.
Plan B. All of the procedures above.
Lastly a Tracheostomy might be necessary but unlikely - Creating an opening in the neck to put a tube into my windpipe. The surgeon will assess on the day whether there's any risk to my ability to breathe during any of the procedures.
Recovery
I've been preparing for my recovery for a few weeks with some pre-conditioning. I've cut down alcohol completely apart from a couple for my birthday. I'm on a high protein, anti-inflammatory diet and doing lots of exercise to build cardiovascular fitness and muscle strength and tone to help me bounce back quicker.
I won't know until I wake up the extent of the procedures that the team will have done. They may deem it necessary for me to stay under anaesthetic through the night after the operation, so there will be a lot for me to take in when I wake up, any time between lunchtime on the 4th to breakfast on the 5th. I won't be having breakfast though.. I think I'll go for some liquid in a tube thanks. The first day or two will be in intensive care (ICU). Once they're happy that I'm not going to choke and that bleeding, pain, swelling and nutrient/calorie intake aren't going to be a problem, I'll be transferred to the ward I'll be sharing with up to three other patients for a further 3-6 days roughly. That's where the party starts. I will be on an enhanced recovery programme where all my activity and intake will be supported and journalled while there. I will gradually have a liquid diet reintroduced and once I can take on enough to sustain me I'll have the feeding tube taken out of my nose. I will also start seeing the speech and language therapist and we'll be establishing the new way my tongue will function for eating, swallowing and talking. I know that the left side of my tongue will forever be numb and the right side will be where I get all my feedback of what it's doing. I will have to learn a new way to form shapes for speaking and for moving food around my mouth and swallowing. I will bite my tongue and I will struggle with making certain sounds. During the neck dissection it is likely that some nerves will be bruised or even damaged, so I am prepared for there to be some weakness in my shoulder and neck muscles and potentially a numb earlobe and droopy numb bottom lip on the left side. Whether these effects are short or long term will depend on the level of damage from the operation. Nerves can heal over time, although very slowly and often not completely, but these side effects of surgery should improve gradually, if they're present in the first place. Much will become clearer straight after the surgery when the next chapter will begin.
